Taken off Tamoxifen

[shoebox186]

My oncologist has just suggested that I stop taking Tamoxifen because of side effects. I took Arimidex for 6 months and could not tolerate it so switched to Tamoxifen. I have not felt that the side effects were intolerable but have had considerable increase in back pain since switching to Tamoxifen. My breast cancer was grade 1 , in the right breast only, hormone sensitive with no lymph nodes involved and I had my ovaries removed after my mastectomy. I am 53 and was diagnosed in October 2008.
I revisit my oncologist in 6 weeks to discuss future treatment options. I am very scared of a recurrence but have I done enough to now decide that I will not have further treatment with either Tamoxifen or one of the Aromatose inhibitors. I would rather continue on with treatment though if that is the best option. Confused at the moment and would like some good advice. Thank you.

[Marylou_II]

Hi shoebox186

There must be a very good reason for your oncologist to have taken you off Tamoxifen, the side effects depend much on each person some don't ever get a side effect and others can not even walk or move without horrible pain.
Your breast cancer was a grade 1, right breast, hormone sensitive and apparently a lymph node involvement, my cancer was the same but no lymph node involvement. I was wondering why you had your ovaries removed, was there a possible complication or any danger in the near future? It would be very rare as a Grade 1 BC is so small that it takes many years to grow to grade 1 and would take many more years to grow another bit. Did you ask your breast specialist how long that cancer took to grow to Grade 1? I was told mine took 15 years.

I did not have swollen lymph nodes in the groin, swollen lymph nodes under arm and swollen glands involved. I was cheated and cornered into having a mastectomy which I highly regret now when there is nothing to be done. It does not bother me to have lost my breast but the scar I have is monstrous and I am possibly having plastic surgery for a scar revision so at least it won't look so terrible.

You are much younger than I the difference is 15 years, this is why I have taken my own health into my hands and I will be the one who will decide what I will and will not do. I spoke to one of the doctors in my oncology team and asked him what would happen if I did not take Femara or any other Aromatase Inhibitors, he was so nice that he got my whole info into this specialized Internet program from a BC official medical site and he got the following results: With chemo 12 to 15 years cancer free; with chemo and radio 12 to 15 years cancer free; with Femara 12 to 15 years cancer free. As you can see all three results were the same thus he told me I was right and not to take Femara or any other AI.

Then I began looking around and doing some personal research, I found that a spoon full of Iodine mixed with water four times a week had the same effect as the AI, in other words Iodine would block the ER+90 and not allow Estrogen to feed cancer cells if any are still around. I have been doing it for a few months and my last ER test has not moved and is fine. I also take Sodium Bicarbonate mixed with water on a daily basis to provide my body with an alkaline environment as cancer does not grow in it, it does grow in acid environments. You must be thinking I am nuts, but to be honest I have switched from Traditional Medicine [Oncology] to Alternative Medicine. One of my oncologists who is a friend does my lab work to make sure I am doing the right things and that my tumor markers, ER; PR and HER2Neu are alright.  

You have 6 weeks ahead till you visit your oncologist, do some research and investigate what your chances are if you do as I have and switch to Alternative Medicine. I have provided you with information that is very difficult to obtain, research and then make up your mind on what you will do and what you believe is best for you. Ask your oncologist about what I am doing and watch his reaction, that may say a lot as to what he thinks your chances would be. Believe it or not many oncologists help their patients with many of the Alternative Medicine treatments.

Good luck.
  

[Cleveland Clinic]

Dear shoebox186:  Both aromatase inhibitors and tamoxifen are effective at reducing the risk of recurrence.  But like all medications, they have side effects.  Though they are generally tolerated by many women, there are women for whom the side effects are intolerable.  This is a personal decision that should be made in discussion with your doctor so that information can be provided within the context of your situation.  We cannot provide specific advice via the internet.